Exploring the implementation of new autistic-led standards in residential and supported living for autistic adults
| ISRCTN | ISRCTN12256307 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN12256307 |
| Integrated Research Application System (IRAS) | 336051 |
| Sponsor | University of Sussex |
| Funder | National Institute for Health and Care Research |
- Submission date
- 06/03/2026
- Registration date
- 06/03/2026
- Last edited
- 06/03/2026
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Care and support are not good enough for autistic adults. Many autistic people are stuck in hospitals when they don’t need to be there. This can happen when care services, like care homes and supported living services, do not support autistic adults well. The Independent Guide to Quality Care for Autistic People (the guide) suggests a better way to support autistic people. The guide was written in 2019 by the National Autistic Taskforce (NAT). The NAT is run by autistic people. The NAT want to help speak up for other autistic people when it is hard for them to speak up for themselves, especially autistic people with a learning disability.
The guide says that staff in care services should respect autistic people’s rights. Autistic people living in care services should have more control over their lives and how they are supported. Staff should listen to autistic people and think about how they feel not about behaviours.
This project will try out the ideas in the Guide, in care services. Autistic people from the NAT, and researchers who know about autism and care services, will work with autistic people living in care services and staff. The project will happen in two different care services.
The project will take two years. We will:
- find things which are not working well
- work out how to fix problems
- try those new ways of working, to see if they work better
We will do these steps 3 or 4 times, to try to make different things better. We will use the ideas in the Guide to help us see things that are not working well for autistic people. We will watch and listen to autistic people living in care services to find out what they think. We will talk to staff to find out what they think could be better. We will have meetings with some of the staff and autistic people who live in care services every month. In the meetings we will
talk about what works well and what doesn’t work well. We will measure how things are changing by visiting the care services, listening to autistic people who live in the care services, families and staff, and looking at what staff have written down.
A different group called the ‘advisory panel’ will meet 4 times per year. The advisory panel will include autistic people; family members; staff; managers and people who decide which care services autistic people are supported by. The researchers will tell the panel what is happening in the project. The advisory panel will tell the researchers what they think.
The project will make new tools to help care services provide better care for autistic people.
Contact information
Scientific, Principal investigator
Department of Social Work and Social Care, University of Sussex
Brighton
BN1 9QQ
United Kingdom
 ORCID ID |
0000-0003-2107-2671 |
|---|---|
| Phone | +44 1273 678167 |
| d.orr@sussex.ac.uk |
Public
Centre for Biomedicine, Self and Society
Usher Building
University of Edinburgh
5, Little France Road
Edinburgh
EH16 4UX
United Kingdom
| ORCID ID |
0000-0003-2688-1734 |
|---|---|
| Phone | +44 131 651 3083 |
| sue.fletcher-watson@ed.ac.uk |
Study information
| Primary study design | Interventional |
|---|---|
| Allocation | N/A: single arm study |
| Masking | Open (masking not used) |
| Control | Uncontrolled |
| Assignment | Single |
| Purpose | Supportive care |
| Scientific title | Developing and applying new autistic-led standards for social care environments: a participatory action research study of Ethical Quality Autistic Led Support |
| Study acronym | EQUALS |
| Study objectives | |
| Ethics approval(s) |
Approved 19/02/2026, London - Camberwell St Giles Research Ethics Committee (2 Redman Place, Stratford, London, E20 1JQ, United Kingdom; +44 20 7104 8000; camberwellstgiles.rec@hra.nhs.uk), ref: 26/LO/0037 |
| Health condition(s) or problem(s) studied | Autism |
| Intervention | Three participatory action groups are expected to run on a monthly basis, and culminate in whole-service reflection. These action groups are designed to implement the National Autistic Taskforce service standards recommendations for autistic people, contributing to culture change within services. As a participatory action project, the process is a focus of learning from the study alongside the outcomes. |
| Intervention type | Behavioural |
| Primary outcome measure(s) |
|
| Key secondary outcome measure(s) |
|
| Completion date | 31/03/2027 |
Eligibility
| Participant type(s) | |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 100 Years |
| Sex | All |
| Target sample size at registration | 17 |
| Key inclusion criteria | People using services: 1. Autistic adults, including those who do not use speech, have co-occurring learning disabilities, or require intensive support 2. Aged 18+ years 3. Living in one of the two participating residential or supported living services Staff employed at either of the participating services, including support workers, senior support workers, team leaders and managers Family members or close friends who visit or remain regularly involved in the life of an autistic adult living in the service |
| Key exclusion criteria | 1. Individuals who are not within one of the key participant categories (i.e. who are not autistic residents, support staff or managers employed by participating services, or family members / close friends with an ongoing relationship to a resident) 2. Individuals with a direct supervisory or governance role over the research project (e.g. steering committee or advisory group members), in order to avoid conflicts of interest |
| Date of first enrolment | 16/03/2026 |
| Date of final enrolment | 31/03/2027 |
Locations
Countries of recruitment
- United Kingdom
- England
Study participating centre
Anonymised
Anonymised
England
Results and Publications
| Individual participant data (IPD) Intention to share | No |
|---|
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Protocol file | version 1.3 | 02/02/2026 | 06/03/2026 | No | No |
Additional files
- 49154 EQUALS Protocol_v1.3 02-02-2026.pdf
- Protocol file
Editorial Notes
06/03/2026: Trial's existence confirmed by London - Camberwell St Giles Research Ethics Committee.
